100 hours per week of work and the rest will take a back seat for the next life.

Alain

13655

Michelle Dawson

07-12-2015

03:53 AM ET (US)

I seem to be setting a "personal worst" in getting behind in everything...

Here's Stephen Wiltshire's recent drawing of Montreal http://www.stephenwiltshire.co.uk/art_gallery.aspx?Id=7299 Mostly what you see in the foreground is McGill. The big round building is the Health Sciences Center--or that's how I think of it. It used to house one of the four McGill libraries I haunted back when, when there was no other way for me to read papers. Now of the four, I believe only one still exists--the Humanities Library.

Also if you go to Laurent's lab website http://www.lnc-autisme.umontreal.ca/ and click on the last (5th) featured image, you'll find a great photo of two colleagues unfurling one of our IMFAR 2015 posters in the great outdoors (...probably the hospital parking lot)

The journalist, Marianne Niosi, had contacted me and I had expressed my willingness to answer her questions. She ignored this and wrote about me anyway, changing my views and work and so on to suit her story.

When I found the resulting article, I wrote to her and to Mediapart, the publisher. Soon after that, the article was then paywalled (as it is now), which might be a coincidence.

Eventually, after a lot of back and forth where I asked for a general correction and apology, I was told the article had been amended with a correction. I no longer have access, so I can't confirm this. But here is the text of the correction, or so I've been told:

That is the journalist's translation of what she selected from her request that I "annotate" her article. This doesn't cover all the false claims she made about me. Here is some of the "annotation" I sent her:

"In this article, all autistic adults are assumed to have similar views. We dont. For example, my view that autistics deserve basic standards of science and ethics is strongly opposed by ASAN, which claims to represent autistic adults."

"This misrepresents my position in Auton, where I opposed both sides, which were indistinguishable in imposing rock-bottom standards on autistics, and argued that the facts from both sides should be thrown out. Here is my position in Auton, in opposing both sides: autistics should benefit from and be protected by the basic standards of science and ethics which everyone else can take for granted. And yes, this is a human rights issue. In other words, I opposed the segregation of autistics, by both sides, from the basic rights and standards which are crucial to the well-being of all individuals. And note that by the time a case arrives at the SCC, there are major limits on what can be argued; I had to argue within these limits."

"I do not see autism as a way of being or as a way of living. I have never expressed this view, much less defended it. I would never express or defend this view."

Note: In fact I don't even know what it means! Often when I'm interviewed, it's assumed this is my view, but like a lot of other assumptions from media and academics, it is not based on what I've actually said or done.

"I do not support autistic culture views of autism and have publicly opposed these views and the poor standards which have accompanied these views. Organizations which support "autistic culture" views of autism have strongly opposed my views and work."

"The only thing Ive brandished is basic standards of science and ethics, which all nonautistic people can take for granted. My knowledge of the literature in the area of autism and ABA is excellent. I have exhaustively searched for any justification for the extremely low standards imposed on autistics in this literature and in the promotion of ABA-based autism interventions. There is none. To the contrary, there is strong evidence that basic standards of science and ethics, and basic human rights, are as important to autistics as to everyone else."

"I take ABA seriously as a field of science. This means reading the very large literature (including textbooks, manuals, as well as peer-reviewed papers) and applying basic standards of science and ethics to this literature. This is a lot of work, but I think autistics are worth the time and effort, and this is what I do in every field. This is not an attack on ABA. Criticism is a crucial part of science; it is not an attack on science."

"I have written about the problem of autistics who have not received ABA-based autism interventions being written off. But this again is an issue of scientific and ethical standards. Using these basic standards, which mean extensively reading the literature, it can be shown that these claims are not accurate, according to what we know now. The proliferation of false claims reflects very low standards of science and ethics on the part of those making them. The proliferation of false claims also makes it difficult to conduct fair tests of the benefits and harms of popular expensive treatments. We thus have expensive popular autism treatments whose benefits and harms, even in the short term (much less the long term), are largely unknown."

"I did not testify at the Supreme Court of Canada. This misrepresents not only me but the SCC process in Auton."

"In Auton, I had to argue that autism is not a fatal disease, as this had been claimed and accepted as true in the lower courts. My arguments about differences were based on how all other individuals are regarded and treated under the relevant law in Canada. This was not a vision but a simple argument that autistic people are human beings and should have the same basic human rights as everyone else."

By the way, re /m13644 , the paper that springs to mind for me, re anxiety and autism, is http://link.springer.com/article/10.1007%2Fs10803-014-2153-3 in which autistics and nonautistics worked and learned together as equals. What a concept. But I'm pretty sure some people would call this approach "ableist" for not using the right model or for who knows what. Anyway, the "autistics and nonautistics work together as equals" approach has been pretty much trashed by advocates and academics who use words like "ableist," and who in my experience promote segregation--at least when it comes to autism.

Edited 05-02-2015 10:42 PM

13645

Michelle Dawson

05-02-2015

10:27 PM ET (US)

There's a really big literature on anxiety in autistics and it's pretty interesting, if you read it carefully.

But I'm not sure what "ableism" means, sorry. Different people define it in different ways and it's not a word I know how to use. Maybe someone could clarify that for me.

13644

theamazinj

05-02-2015

08:50 PM ET (US)

Hi everyone,

I am doing research for my class at CUNY SPS for psycho social about how Autistic people struggle with anxiety with their families and the community they are in because of not only needing to cope with anxiety but dealing with the ableism around too. Every time I search for sources, everything is based on the struggles that families and the communities have, but not what Autistic people have.

What do you think I can use for sources? Does anyone have any suggestions for sources I can use?

"I am a pointy-headed economist who refuses not to aim for the gold standard in empirical research (i.e. randomization) whenever possible, he said in an e-mail Wednesday morning. Anything less is not fair to kids, their parents, or the policy makers who use the research."